Jo Cartwright is a biomedical graduate who, having spent time working in palliative care, gained an in-depth knowledge of the issues surrounding choice and compassion at the end of life. She is currently the press manager at UK charity Dignity in Dying who campaign to legalise assisted dying for terminally ill, mentally competent adults.
I think at the core of what Dignity in Dying is doing is choice
On becoming interested in science
I first became interested in science when I was considering what I wanted to do for a job and I decided I wanted to do medicine. So I studied GCSE and A Level science and went to university and did a biomedicine degree, um, which led me to thinking about all the various medical issues that surround end of life care and that’s what brought me here.
On Dignity in Dying
Dignity in Dying campaigns to legalise assisted dying for people who are terminally ill and mentally competent. So Dignity in Dying would like people to have that choice available to them in the knowledge that, in countries where assisted dying is legal, most people don’t take that choice but that choice being available makes a difference to so many people who are facing those decisions and want to know that’s an option if their suffering becomes unbearable for them.
On the proposed Assisted Dying Bill
In 2011, a commission was set up by the think-tank Demos and they wanted to look into assisted dying and how it works in other countries, whether it could work in the UK and what the situation was at the moment in the UK and how it was affecting people’s end of life. There were twelve commissioners who went to different countries where assisted dying was legal, took evidence from lots of organisations and individuals and they came out with the conclusion that the current situation was not appropriate for people who are dying in this country and something needed to change. Their recommendations were then turned into a Bill which Lord Falconer has tabled in the House of Lords and we hope to see debated in Parliament in the coming months, if not, next year.
Lord Falconer would like to see a Bill passed through Parliament which would allow terminally ill people to be able to ask a doctor for a prescription for life-ending medication which they would then choose to take, or not, if their suffering became unbearable for them. There’s a number of safeguards in the Bill including the person being within the last six months of the end of their life, having engaged with end of life care, having explored all of the alternatives, being over the age of 18 and a number of other safeguards, like having conversations with various healthcare professionals and palliative care specialists. Then, if that person satisfied all of the criteria they would be able to ask for a prescription for life-ending medication which a doctor would then bring round to them if and when they chose they wanted to take that prescription. The doctor would then have to stay with that patient until they had either taken the prescription or decided not to take it and the doctor would take that prescription away again.
There are a number of people who oppose assisted dying and, um, the arguments are varied but tend to be about protecting vulnerable people, but Lord Falconer’s Bill would actually add safeguards to a situation at the moment which is not safeguarded. So at the moment people can travel abroad to have an assisted death without going through any checks or balances in this country. There’s a concern that potentially vulnerable people would be coerced into choosing an assisted death because they felt like a burden, but that is the case at the moment. If people want to make these decisions they often are making them behind closed doors and often on their own. So this Bill would provide the opportunity for people to discuss how they wanted to die, what their issues were, to explore all the alternatives and to try all the alternatives. So to be enrolled in palliative care and to have those conversations with their loved ones and then, if after that process they still want to choose an assisted death, that would be available to them.
But the majority of the public support a change in the law. More than 80% consistently say they would like the laws available for people who are dying.
It’s very difficult to work out how many suicides are because somebody hasn’t had the option of assisted death, but there was some research done by the Commission on Assisted Dying and they found that probably 10% of suicides are by people who are chronically or terminally ill, and that was a conservative estimate, so I think there are incidents of people taking their own lives because they don’t have the choice. And people are attempting to take their own lives and not succeeding because they’re terminally ill or they’re chronically ill and they’re not physically able to do that themselves and they don’t want to ask their loved ones to help them. And there are people – two people a fortnight – travelling abroad to have an assisted death. One person a week going to Switzerland to die. And often while they can still travel and are still physically able to do it by themselves so they’re not implicating anyone else, which means that they are dying sooner than they otherwise would want to.
On assisted dying in relation to mental illnesses
So many people would like the option to choose to end their life if they were to get dementia or Alzheimer’s and I think it’s a fear that a lot of people do have, especially if they’ve seen someone dying with Alzheimer’s and the time it takes to go through that process and the things it takes away from you, um, but it’s very important in Lord Falconer’s Bill, and for Dignity in Dying, that the person choosing to die is able to make that choice, so is competent. And somebody with dementia loses capacity, eventually, to make those decisions themselves. So it wouldn’t…our Bill wouldn’t be available for people with dementia unless they also had a terminal illness and they were capable of making that decision before the dementia progressed too far.
We do have a charity, Compassion in Dying, which provides things like advanced decisions to refuse treatment. So anybody who is worried about what might happen to them if they were to lose capacity and wanted to make decisions about their end of life care can do so legally while they have capacity. So anybody can make an advanced decision to say that if they do get dementia and they get some kind of illness that requires life sustaining treatment or artificial hydration or ventilation then they don’t want to have that treatment. And that’s a way that people can take control now over what might happen in the future. And that’s fully legally binding and doctors have to adhere to it, even if it wouldn’t be the decision they would make for that patient.
On Debbie Purdy’s case
Debby Purdy’s legal case established a set of guidelines that the Director of Public Prosecutions provided after she won her legal case which set out the factors for and against prosecution and those guidelines made very clear that organisations like Dignity in Dying would absolutely be prosecuted if they did anything to assist or support anybody to have an assisted death under the current law. So we have to be very careful at Dignity in Dying not to give anyone any information about how they might end their lives. All we can do is provide information about what people can do under the current law. So we can’t do a huge amount really for people whose loved ones are facing those decisions now apart from provide them with information about what they can do and also get them involved in the campaign so hopefully by the time other relatives or friends are in that situation, we’ve changed the law so that people do have that choice without friends and family having to get directly involved in helping their loved ones to die, which is an awful predicament to be in and we know it really damages the lives of people who are involved directly afterwards and, kind of, going forward.
On the evidence supporting assisted dying
I think the best thing we can refer to, as far as evidence goes on why an assisted dying law would be good, is that in states like Oregon and Washington in America they’ve had the kind of law we’re campaigning for…in Oregon, for fifteen years, more than fifteen years. And none of the imagined fears that were cited before it was legalised have happened. So, there’s been no slippery slope, there’s been no cases of ‘the more people talk about it, the more people choose an assisted death’. The numbers of people choosing an assisted death remained below 0.2% of deaths each year. And, um, having the option to talk about the kind of death you want has actually meant that family members have, rather than pressurising people to choose assisted death, they’ve been doing the opposite and pressurising their loved ones to stick around for that next event and sort of hang on a bit longer because they know they have that choice.
And the other evidence is that at the moment things are clearly not working. People are travelling abroad to die sooner than they want to. People’s lives are being shortened because there isn’t a choice. So knowing that people are taking these choices in the UK now means that we need to provide some kind of framework to either stop them entirely from being able to travel abroad to die and stop them from being able to shorten their lives or provide a framework where somebody can choose to end the suffering in the last few days or weeks of their lives.
On why many scientists strongly support assisted dying
I think at the core of what Dignity in Dying is doing is choice and control and many people who have a background in science and, um, who go through the process of their lives based on evidence and rational thought would make lots of decisions based on informed choices and I think that’s what people are asking for now. And people have a huge respect – or Dignity in Dying have a huge respect – for people who have faith beliefs which means they wouldn’t be able to choose an assisted death but that shouldn’t prevent people who don’t have those beliefs from being able to choose an assisted death.
On future medical advancements
I think my experience that sort of brought me to Dignity in Dying was looking after somebody who had Huntington’s Disease and it was a particularly horrible thing to witness. And this woman was 27 when she died, so she was very young to have the disease and therefore much stronger and took quite a long time to die than other people might. And I saw her waste away and lose everything that was valuable to her. The ability to speak and eat and watch TV and communicate with her loved ones. So I think that for people with neurological conditions which kind of rob them of their ability to do the things that they love, that’s what I’d like to see cured.
It’s difficult to kind of go into detail about what an assisted dying law would mean for people that are dying without talking about the gruesome reality of death and what it’s like to die and we really don’t want people to be scared about what is inevitable for all of us. So it’s a difficult balance really to be able to discuss the process of dying and how that’s likely to manifest itself, and how you can address that with assisted dying, without kind of going into the graphic detail. So it is a difficult one and I think the reality of death is something that we’ve been shying away from since Victorian times. It’s become very clinical and behind closed doors and people don’t know what it’s like to die because they’re not seeing their loved ones dying in the same way that they used to. So I think that that is a problem for the campaign.